Do You Ever Break Down And Eat Gluten Every Once In A While?

[notme]

if your (damaged, inflamed) intestines were visible, i don't think this would be such a temptation.  personally, it's not even a question for me:  no, i don't.  no, i won't.  no, i never did.  no, i never will.  even by eating a little gluten, now and again, will start the whole autoimmune cycle over again.  my body is cleared from all gluten, and so the cycle has been stopped.  no more headaches, i have been adding in more foods that i couldn't eat before, i don't sleep all day, i don't spend all morning in the bathroom, my hair isn't falling out, my skin isn't itchy and scratched bloody.....  and hopefully, i can reverse any damage that was done for so many years.  i certainly don't want to go through detox/withdrawal again on purpose     frankly, when you say you are diagnosed and then you cheat, you mis-educate other people and cause them not to take this (life saving, for me) diet seriously.  

[NoGrainNoPain]

In answer to your question, three months ago I could NOT pass up two bites of a Belgian Lacy Cookie with a roasted marshmellow. It was to die for, literally. I've forgotten the digestive distress it caused, but I remember the rash I had for a month. It was so painful. I hadn't remembered it being so painful before. When I'm tempted, I remember that rash. I'm starting to have food aversions. I've actually asked my coworkers to support me in periods of weakness. They say: "Don't eat it, it will make you sick."

 

I'm grain free, and avoid "gluten free" labels. It's tough, but I've learned a lot about what makes me sick. Prepared and proceesed foods aren't reliable. I challenge you to eat grain free and proceesed free, all prepared at home meals for two weeks, and see how you feel. You can still eat fresh meats and fish, up the greens, sweet potatoes and squash and the olive oil or butter from grass feed cows. Then you'll will see what gluten does to you when you cheat. That little headache that you haven't had suddenly comes back. You mysteriously get another sinus infection, and the list goes one. Don't torture yourself. Your tastes will change, and you will take others with you on a health food journey when they see how amazing your skin looks because of all the beta carotene your getting in your diet.

[gilligan]

Never!  I'm not even tempted for a few reasons:  I find over time that I lose desire for foods I used to eat, I want to feel better, and I now know what an accidental glutening feels like and it's not fun!

[nvsmom]

I was at someone's house over the holidays and they were telling me how they had had a celiac over for Xmas dinner and he ate the stuffing and turkey because "it looked too good to pass up.  Now thanks to him our friends don't take the diet as seriously - I felt the mental eye rolls when I wouldn't eat the rice crackers that were mixed in with the regular crackers. 

 

I know people don't think of it at the time, but cheating really does make the (strict) gluten-free into the joke the media portrays it as.

[squirmingitch]

Never been tempted in the least! Nope not once. Zero, zip, zilch, nada desire to eat anything gluten. 3 years gluten free & no accidents because I am vigilant as all hell. I never eat out, never eat anything I haven't prepared (some gluten-free processed foods) but nothing prepared by someone else at their house. I have the celiac rash & nothing, absolutely NOTHING anyone put in front of me to eat that contained gluten would be worth going through the "suicidal rash" again. Gluten foods do not tempt me in the least. I don't think about them. I honestly don't think I would find them tasty anymore. I seriously believe they would now taste awful to me. 

[WinterSong]

I've never "broken down" because I feel like I eat like a queen on the gluten-free diet. I learned how to bake from scratch and now make my own pizza dough, bread, muffins, tarts, ect. 

 

In the past I did vaguely mull over the thought of eating a bit of gluten to test my reaction time, so that I could pinpoint future mistakes. But then I think that I could have to call out of work for a week and will just be absolutely miserable. Not worth it. I'm sure there will be a time when I accidentally get glutened, find out ten minutes later "Oh no, there was soy sauce in that!" and I'll test my reaction time from there, lol. 

[WinterSong]

Oops, didn't realize I had commented on this post twice!

[notme]

I was at someone's house over the holidays and they were telling me how they had had a celiac over for Xmas dinner and he ate the stuffing and turkey because "it looked too good to pass up.  Now thanks to him our friends don't take the diet as seriously - I felt the mental eye rolls when I wouldn't eat the rice crackers that were mixed in with the regular crackers. 

 

I know people don't think of it at the time, but cheating really does make the (strict) gluten-free into the joke the media portrays it as.

amen to this, nicole!  we have one other celiac in my town (that i know of - there must be more, the rudi's original is *always* sold out lolz) and he is a gravy scraper - you know the ones who scrape the gravy off the meat and eat it anyway, or they just eat the pie off the crust.  he walks around with his hands in fists, and he showed me one time - they are a dh mess    anyways, he goes to my church and eats the 'regular' communion bread.  i bring my own - makes me look like a nit-picker...  he is truly the nicest fellow i feel like slapping   

[BlessedMommy]

I think that maybe it's lack of education. I knew a celiac who would happily eat peanut butter after gluten eaters had dipped into it because as he put it, "I'm not that sensitive." Perhaps people think of it as an allergy instead of an autoimmune disorder.

[nvsmom]

I thinks ome people just don't care to take control of their health. It is like the type 2 diabetic who still eats any sugars he pleases even though he knows he shouldn't. For some, their health isn't important... That felt so odd to write!  LOL

[MGR]

... thanks guys for cheering me up!!! I have just been travelling over Christmas and New Year and although I have now been gluten free for a year - I still believe in the "good nature" of restaurant staff and give in to eating my steak and salad as usual (because this is the only thing I feel is safe to eat that I have not cooked myself) and feel annoyed that yet again I end up with a sore tummy!!! I just don't seem to learn. It already took me a couple of months to learn to read labels first and then eat...

 

However, this Christmas I did break my NO GLUTEN rule when I went to meet some friends I hadn't seen in 20 years in a restaurant- as usual I asked for my steak and salad- and although the waiter said they had cooked everything separately, everything appeared together on the same plate, together with the chips-that I knew were contaminated, because I had asked about the oil beforehand. With all the Christmas goodies I had not been able to eat and a bit upset for personal reasons- I was weak and thought s**** it! and ate 4 potato chips- Not only did I get told off by the waiter who had gone through so much trouble... haha - and as a punishment I also had a sore tummy for the next few days and constant D!! Still recovering now... I will certainly remember next time!!! 

[sunny2012]

No, never, not for any reason. Why would I want to poison myself?

I have neurological symptoms first. It is a nightmare to have to suffer until I recover. Plus, if I do it to myself, others assume "a little bit can't hurt me". That just makes my life even more of a trial.

[MitziG]

I figured out that I probably have celiac at the beginning of the year. I am undiagnosed, my blood test came back negative (I had already been gluten free for a week.. I don't know if that's long enough to affect anything) and my doctor never sent me in for a biopsy. Since going gluten free.. nearly all of my problems have resolved. I had missed so much school (I'm 18) due to just plain feeling unwell.. stomach aches, nausea, migraines, general fatigue.. and no fever. It was the same thing every time.. as well as a whole array of other things in general. I am convinced that I have celiac disease (it runs in my family too) and will probably never go back to eating gluten.

 

That being said... Do you ever just have ONE day where you NEED to eat that amazing looking cake? I have never deliberately eaten anything containing gluten since going gluten free. I did accidentally consume a microscopic amount at a restaurant yesterday though.. I think.. because I've been feeling sort of unwell, stomach achey, and sleepy all day. If a tiny amount of gluten does that to me.. would I be violently ill if I were to eat.. say.. a bowl of actual pasta? 

 

There is this one dessert at California Pizza Kitchen that I want to have again.. at least one more time in my life. Butter cake. Or... I would love to have Bertucci's alfredo... or hell, I'd like to be able to go out to dinner with people one night and not even think about what I'm ordering and if the kitchen is safe and if that item listed as gluten free is REALLY gluten free or not! 

 

Has anyone ever caved since going gluten free? What did you eat? How sick did you feel the next day? Was it worth it?

I fantasize...but no, I don't cheat. Here is why- right now, you feel unwell from eating gluten. The longer you are off it though, the immune response will become stronger. That doesn't mean the disease is worse, it means your immune system has healed enough to launch a full out WAR against gluten, as opposed to just throwing snowballs.  For me, a few months in, I cheated- once. I thought, at the beginning of the diet, that I could now and then, if I really wanted to, because I didn't always get noticeably ill right away from eating it before. Big, big, big mistake. So horribly violently ill I wanted to DIE. You don't want to go there, trust me. Plus, you will get accidentally glutened many times, by restaurants, well meaning friends, or even your own carelessness. Every single time your immune system is exposed to gluten, it will respond, and that response will take MONTHS to shut down again. Months.

 

Now, you are in the unfortunate position of not knowing 100% that you have it- and that makes it tough because it is easy to say, "I don't even know if I have celiac, so does it really even matter?" Plus, if you have felt good for awhile, you may forget just how bad you felt before. So...my advice is to start eating gluten again, right now. Go load up and get back to the doctor and INSIST on more tests. Very few doctors will run a complete celiac panel, and most don't even know what it is, but you can find the whole list on this sites. Most drs run one or two tests, but there are SIX, and you can have celiac and only have one of them be positive. You can still have celiac and NONE of them will be positive. Blood work is extremely accurate as far as not having false negatives- if the tests say you have it, then you almost definitely have it. (But most drs don't know that because the testing used to be inaccurate a lot- tests have improved) But, FALSE negatives are very common. The tests catch about 75% of cases, the rest fall through the cracks. So if you get all the labs done, and it is still negative, then INSIST on a biopsy. (Endoscopy, not colonoscopy- believe it or not a lot of docs think you test for it by colonoscopy, but celiac  affects the UPPER intestines and duodenum, NOT the colon.) And INSIST they take a minimum of four samples because celiac is often patchy and easily missed. Then, if the biopsy is still negative, you can probably safely say you don't have celiac. Not 100%, but most likely. Then you make the decision if you are going to keep doing this-and only you can decide that. You don't have to have celiac to have a very serious response to gluten- as many here will attest to. Some people's bodies just do NOT like gluten, no matter what the tests say.

 

To have accurate test results, you have to be eating gluten- lots and lots of it. And if you stop eating it, even for a short while, those antibody levels can drop too far to be detected in blood work, and your intestinal villi can heal fast enough that there isn't visible damage. So, go get that butter cake, maybe two slices...and anything else you know you will miss dearly (FYI...pretty easy to make gluten-free cakes that taste identical- bread, donuts, croissants and egg rolls...not so much. Choose wisely.) And then get tested again. Do as much as you can to eliminate uncertainty, because without certainty, this diet is really, really, really hard to stick to 100%. You have to KNOW you can't cheat, or you most likely will.

[MitziG]

... thanks guys for cheering me up!!! I have just been travelling over Christmas and New Year and although I have now been gluten free for a year - I still believe in the "good nature" of restaurant staff and give in to eating my steak and salad as usual (because this is the only thing I feel is safe to eat that I have not cooked myself) and feel annoyed that yet again I end up with a sore tummy!!! I just don't seem to learn. It already took me a couple of months to learn to read labels first and then eat...

 

However, this Christmas I did break my NO GLUTEN rule when I went to meet some friends I hadn't seen in 20 years in a restaurant- as usual I asked for my steak and salad- and although the waiter said they had cooked everything separately, everything appeared together on the same plate, together with the chips-that I knew were contaminated, because I had asked about the oil beforehand. With all the Christmas goodies I had not been able to eat and a bit upset for personal reasons- I was weak and thought s**** it! and ate 4 potato chips- Not only did I get told off by the waiter who had gone through so much trouble... haha - and as a punishment I also had a sore tummy for the next few days and constant D!! Still recovering now... I will certainly remember next time!!! 

 What you did, regardless of the situation and how you felt (Because believe me, we have ALL been there) makes life for the rest of us REALLY hard. One waiter that has seen you blow it off after he worked hard, means that same waiter probably wont try as hard, or at all, for the next celiac that comes in. Now, you know what you did was wrong, and you know why...so it isn't fair of me to be mad. But, now that you know...never, ever, ever again! Ever! because you don't just have a responsibility to yourself, you have a responsibility to the entire celiac community, whose lives and well being DEPEND on people taking it seriously.

[MitziG]

People ask me this occasionally and the answer is always, "No."  I have not knowingly ingested gluten in the last 4-5 years. 

 

Of course there are plenty of things I would love to eat.  Strangely, Pizza Hut pan pizza is near the top of the list, since most gluten-free pizzas are just thin crust.  I want that oily, chewy crust that holds up to being reheated later.  Mmm.  And pie!  You rarely find gluten free pie or cheesecake, or things that are mostly gluten free except for the pesky crust. 

 

But it's not worth intestinal bleeding.  I spent nearly 20 years of my life being sicker than sick, and cutting out gluten was the magic spell that solved my intestinal bleeding problems.  Only you can decide if "cheating" is worth the pain.  For me it isn't.  At all. 

I have found a pretty close second to Pizza Hut pan pizza (because I hear ya! Thin crust isn't the same!) Chebe cheese bread mix (Which you can actually make yourself with tapioca flour and tapioca starch much cheaper and if you aren't lazy.) Anyway, two boxes makes a ROCKING large pan pizza with a delicious chewy crust that just gets better with re-heating. I have even made it into a stuffed crust one time. (Not as pretty as Pizza Hut's, but just as good!)

[MitziG]

It would probably be a lot easier if I felt ill eating gluten, but as I don't notice any difference its difficult to get used to. Every hour Im thinking of more and more things I can't eat. Yes its easy to say focus on the things you can, and I know those desires and cravings will go away but its still a loss........places we can't go anymore, favorite treats & places to eat out. I understand gluten is a poison to me, as is sugar. Getting off sugar is very difficult too. Trying to get off both will take time, and extra planning. I know in the long run it will be easier, but it will mean a lot of planning and a lot of will power resisting donuts and pizzas at staff meetings and the like. Im sure its a lot easier if you get sick right after eating stuff like that, but I never had. The only reason I was tested is because my son was diagnosed, so its quite a mind frick. I've literally had nightmares about it the last 2 nights.........

 

Felix

"The only reason I was dx was because my son was..." That is your reason. He has to go through the rest of his life not eating gluten, and you would never, ever put him at risk I am sure. But kids do what they see. If you swear, they swear. If you smoke, they smoke. And if you cheat, you can bet he will too. His life is very literally in your hands, cuz it is on your fork.

[MitziG]

I was asymptomatic prior to Dx, so my will power does fail me from time to time. Last week I was at a football game and incredibly hungry. Of course stadium food is the worst so I caved and at a piece of pizza. Then, this past weekend I ate one of my mom's homemade flour tortillas (they are the #1 thing I miss the most).

 

Both times I did wind up having some stomach cramping. I consider myself incredibly fortunate because that's ALL I had. Of course, now, my willpower is in check for the upcoming holiday challenge!

 So you not only cheat, but you do it in public? That is why the rest of us have waiters that don't take us seriously, friends that say, "So and So can eat a little and it doesn't hurt them'" and family members who roll their eyes at us when the restaurant choice for a family dinner is limited to ones that the four celiacs in my family can actually eat at. So instead of thinking you need more will power, how about thinking of the responsibility you owe to the rest of us? It is easy to subject yourself to the consequences, especially when they aren't horribly painful and immediate. But it is entirely another to go, "Sure, I will eat that flour tortilla just this once, " when you think about that little kid who ends up hospitalized because of your indiscretion. If you are going to cheat, please stop telling people you are gluten free.

[MitziG]

I was at someone's house over the holidays and they were telling me how they had had a celiac over for Xmas dinner and he ate the stuffing and turkey because "it looked too good to pass up.  Now thanks to him our friends don't take the diet as seriously - I felt the mental eye rolls when I wouldn't eat the rice crackers that were mixed in with the regular crackers. 

 

I know people don't think of it at the time, but cheating really does make the (strict) gluten-free into the joke the media portrays it as.

YES! And it really makes me @$%^*$^&*#^$% angry too! If they must cheat, then I wish they would stop telling people they have celiac disease.